Schoolgirl raising awareness of rare disease by telling jokes

An 11-year-old schoolgirl is set to tell a joke every day this month on social media in memory of her Co Antrim grandfather and to raise funds for the Northern Trust Pulmonary Fibrosis Support Group.

During her summer holidays, Hannah, from Newcastle West, Co Limerick, was busy contacting famous figures from all over Ireland and beyond to generate an extensive repertoire of jokes so she has plenty of side-splitting material to share online.

Hannah is undertaking the social media challenge in memory of her grandfather, Tony Devlin, who was from Ballymena and who died in March, 2022, from idiopathic pulmonary fibrosis, a life-limiting chronic and relatively rare progressive lung disease.

September is worldwide Pulmonary Fibrosis Awareness Month and the theme for the 2022 campaign is ‘Here For Each Other’.

One of the jokes Hannah will tell was given to her by former Coronation Street star Julie Hesmondhalgh, who is best known for her role as Hayley Cropper on the cobbles, who is patron of Action Pulmonary Fibrosis.

Speaking about her challenge, Hannah said: “Grandad was a very funny man who was always telling me, and my brother Mikey jokes.

“He encouraged us to do #jokeofthedaywithhannahandmikey on Instagram during lockdown to keep everyone’s spirits up and was very proud when we appeared on the RTÉ 1 Today Show with Maura and Daithi.

“I hope lots of people will search for #HaveALaughForPF and enjoy the jokes that have been sent to us and perhaps donate to the fundraiser,” she said.

Tony Devlin had been actively involved in the Northern Trust Pulmonary Fibrosis Support Group (NTPFSG), a charity organisation and support network that is patient and carer-focused with clinicians, patients and carers working together to support sufferers of pulmonary fibrosis and their families all over Northern Ireland.

Speaking about the campaign, NTPFSG chairman Tom McMillan from Ballycastle, said: “We are absolutely delighted to be involved with #HavealaughforPF. Pulmonary Fibrosis (PF), is a devastating, progressive and terminal disease, with a life expectancy of between three and five years from diagnosis. PF has a prognosis worse than many cancers.

“Sadly there is no cure for PF and in some cases no known cause.

“The NTPFSG understands the many challenges that sufferers of this disease and their families will face. It is for this reason that we are delighted to be able to promote increased awareness and have a laugh or two every day during September World Wide PF Awareness Month.

“Tony Devlin who was Hannah’s grandad was a very active member of our support group. He made us all laugh at our meetings; he was also a very dear friend.

“He will be immensely proud of his family, working so hard to increase awareness and helping us all forget about our troubles for a moment every day. #HavealaughforPF is an incredible legacy in memory of a wonderful man and for the many other sufferers of PF that have gone far too soon.”

Pulmonary Fibrosis is a condition in which the lungs become scarred and breathing becomes increasingly difficult.

It’s not clear what causes it, but it usually affects people who are around 70 to 75 years old, and is rare in people under 50.

Several treatments can help reduce the rate at which it gets worse, but there’s currently no treatment that can stop or reverse the scarring of the lungs.

Symptoms tend to develop gradually and get slowly worse over time and can include shortness of breath, a persistent dry cough, tiredness loss of appetite and weight loss, rounded and swollen fingertips (clubbed fingers)

Many people ignore their breathlessness at first and blame it on getting old or being out of shape. But eventually even light activity such as getting dressed can cause shortness of breath.

See a GP if you have struggled with your breathing for a while or have had a cough for more than three weeks.

These symptoms are not normal and should not be ignored. If a GP thinks you could have a lung condition such as pulmonary fibrosis, they can refer you to a hospital specialist for tests such as: breathing (lung function) tests, blood tests,

a chest X-ray and CT scan, a lung biopsy, where a small piece of lung tissue is removed during keyhole surgery so it can be analysed.

In people with idiopathic pulmonary fibrosis, the tiny air sacs in the lungs (alveoli) become damaged and increasingly scarred. This causes the lungs to become stiff and means it’s difficult for oxygen to get into the blood. The reason this happens is not clear. Idiopathic means the cause is unknown.

*To find out what well known celebrities have responded to Hannah’s call for jokes, search for #HavealaughforPF on social media during September and/or visit www.northerntrustpfsg.com to make a donation.

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